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Help with 8 week PCR results and other questions
Hi, just got back 8 week viral load tests today, I'm a little confused but can see I didn't get a 2 log drop.
After looking at a few websites on viral load I realized all along I have assumed the incorrect amount of viral load I have:((
Original test was as follows:
1,970,000 IU/mL
6.3 Log IU/mL
The following comment on test I never noticed:
"There is an approximate relationship of 1 HCV RNA IU/mL to 2.5 HCV RNA copies/mL.
I guess this means I had count of 4,925,000 all along:((
results from 8 week PCR done by same lab with the same 2.5-1 HCV IU-HCV copies/mL
241,000 IU/ML or 602,500 copies/mL
5.4 Log IU
So only a .9 drop after 8 weeks and I guess my original count was much higher than I thought.
Doc is optimistic, I am more of a glass half empty guy, he believes in TX and wants to continue, retesting at 16 weeks instead of 12. I am tolerating TX OK for now.
I am male 57, type 1-a, BX grade 2, stage 2, had this thing about 36 years I guess, DX 5/03 after high ALT (83), recent liver test show ALT 38 and AST 31
I will continue and hope for the best, was wondering if 12 week test should be done anyway, I think Doc is concerned about the emotional effect of a poor result and thinks 16 weeks may offer better news? Of course this is my interpretation of his reasons. He wants to do TX for 6 months no matter what, he is a believer it helps the liver longer term.
Is there any tests/studies regarding 8 week results vs 12 week, is it possible to have a significant improvement in 4 weeks or is that unrealistic thinking.
Thanks
don
After looking at a few websites on viral load I realized all along I have assumed the incorrect amount of viral load I have:((
Original test was as follows:
1,970,000 IU/mL
6.3 Log IU/mL
The following comment on test I never noticed:
"There is an approximate relationship of 1 HCV RNA IU/mL to 2.5 HCV RNA copies/mL.
I guess this means I had count of 4,925,000 all along:((
results from 8 week PCR done by same lab with the same 2.5-1 HCV IU-HCV copies/mL
241,000 IU/ML or 602,500 copies/mL
5.4 Log IU
So only a .9 drop after 8 weeks and I guess my original count was much higher than I thought.
Doc is optimistic, I am more of a glass half empty guy, he believes in TX and wants to continue, retesting at 16 weeks instead of 12. I am tolerating TX OK for now.
I am male 57, type 1-a, BX grade 2, stage 2, had this thing about 36 years I guess, DX 5/03 after high ALT (83), recent liver test show ALT 38 and AST 31
I will continue and hope for the best, was wondering if 12 week test should be done anyway, I think Doc is concerned about the emotional effect of a poor result and thinks 16 weeks may offer better news? Of course this is my interpretation of his reasons. He wants to do TX for 6 months no matter what, he is a believer it helps the liver longer term.
Is there any tests/studies regarding 8 week results vs 12 week, is it possible to have a significant improvement in 4 weeks or is that unrealistic thinking.
Thanks
don
Hi, Joni,
As you can see, the early weeks' sx vary a lot. My first week was a freeby; a BIT of temp and "flu" the first night, then fine the rest of the week. I even went cross-country skiing. I thought maybe I'd done the shot wrong, it hadn't even gone in... The second week I got chills I couldn't shake on shot night. Then I started to have the lowered blood counts, and the fatigue set in. My first ~3 months were kind of rough, mostly with fatigue; after a good PCR at 12 weeks, things settled down, and it was easier to be motivated and positive.
Later on the non-CBC physical sides became mostly nuisances, a balancing act. The mental part - staying positive, staying active, taking care of my health and my relationships - became tougher.
I've had some tough times with this tx, but it has been doable with a great GI doctor and GIPA. I am an extreme case, i.e. extremely sensitive to the tx drugs, and got extremely low WBC and RBC's from treatment; most of my other sides are directly related to that, or else they are very minor. I'm still working at my part (~1/2) time job; I'd be full time if they'd hire us full time, but just this year it was convenient.
I'm on for 48 weeks (G.1b); I think it's a blessing for anyone to have the 24-week Genotypes and higher odds. But it's a blessing for me to have a chance at a cure.
Good luck next Friday and for the coming months. I wish you an easy ride.
Maj Neni
As you can see, the early weeks' sx vary a lot. My first week was a freeby; a BIT of temp and "flu" the first night, then fine the rest of the week. I even went cross-country skiing. I thought maybe I'd done the shot wrong, it hadn't even gone in... The second week I got chills I couldn't shake on shot night. Then I started to have the lowered blood counts, and the fatigue set in. My first ~3 months were kind of rough, mostly with fatigue; after a good PCR at 12 weeks, things settled down, and it was easier to be motivated and positive.
Later on the non-CBC physical sides became mostly nuisances, a balancing act. The mental part - staying positive, staying active, taking care of my health and my relationships - became tougher.
I've had some tough times with this tx, but it has been doable with a great GI doctor and GIPA. I am an extreme case, i.e. extremely sensitive to the tx drugs, and got extremely low WBC and RBC's from treatment; most of my other sides are directly related to that, or else they are very minor. I'm still working at my part (~1/2) time job; I'd be full time if they'd hire us full time, but just this year it was convenient.
I'm on for 48 weeks (G.1b); I think it's a blessing for anyone to have the 24-week Genotypes and higher odds. But it's a blessing for me to have a chance at a cure.
Good luck next Friday and for the coming months. I wish you an easy ride.
Maj Neni
The side effects for me weren't too bad the first couple of months. The nurse gave me my first shot and I stopped at a Chinese Buffet on the way home for dinner. By the time I got home about an hour later I was starting to feel the chills. I put on some blankets and went to sleep. The next week I took Tylenol and Advil after the injection and the chills weren't too bad. The biggest problem was insomnia. I just couldn't get comfortable so I didn't sleep well.
I took Peg-Intron. The first three doses were lower. It really confused me at first but I've since read that they have lower drop out rates with people who start with a lower dose.
I'm 1a, 42 yrs, male and SVR at 4 months. I weighed 205 pounds when I started treatment so the dose was 5 cc of 150 micrograms and 6 Riba. For the first 3 weeks they started me at 4 cc of 120 micrograms and 5 Riba. When they upped my dose at the fourth week, I was upset because I felt they didn't know what they were doing and started me at the wrong dose.
I've really learned a lot reading the posts on this group and wish I had known about this while on the treatment.
I took Peg-Intron. The first three doses were lower. It really confused me at first but I've since read that they have lower drop out rates with people who start with a lower dose.
I'm 1a, 42 yrs, male and SVR at 4 months. I weighed 205 pounds when I started treatment so the dose was 5 cc of 150 micrograms and 6 Riba. For the first 3 weeks they started me at 4 cc of 120 micrograms and 5 Riba. When they upped my dose at the fourth week, I was upset because I felt they didn't know what they were doing and started me at the wrong dose.
I've really learned a lot reading the posts on this group and wish I had known about this while on the treatment.
My partner gave me all my shots, 3xwk, 24wks. We liked the morning and then, after tea and an English muffin, we went for a walk before it got hot. So, he was very invoved and very aware I was injecting powerful drugs, since he was injecting me. It wasn't abstract or easy to ignore. So sx, when they came, didn't come out of the blue for him. He knew when and why.
He also made all the protein drinks and most of the cooking. I kept up the house, b/w/the kids gone, that was easy. Once I was dx, we planned for 2 yrs, at a huge professional loss, devoted to pre-ts, tx and post tx.
Our relationship grew much stronger and the pick up band he worked w/ since he wasn't touring, is now poised to tour.
I just told everyone, esp family, that it was all about me and the only commitment I had was to heal. I had absolutely no guilt. And we all benefited from a much lower key style of living.
We're all different as to sx's. My 1st few shots, we just sat there waiting for me to change, like a warewolf. My mom even called to ask if I had any sx's.
He also made all the protein drinks and most of the cooking. I kept up the house, b/w/the kids gone, that was easy. Once I was dx, we planned for 2 yrs, at a huge professional loss, devoted to pre-ts, tx and post tx.
Our relationship grew much stronger and the pick up band he worked w/ since he wasn't touring, is now poised to tour.
I just told everyone, esp family, that it was all about me and the only commitment I had was to heal. I had absolutely no guilt. And we all benefited from a much lower key style of living.
We're all different as to sx's. My 1st few shots, we just sat there waiting for me to change, like a warewolf. My mom even called to ask if I had any sx's.
Yahooo!!! Congrats. Great news. I was just wondering where you were. Hopefully I can share that same joy one day. I'm also glad to hear your feeling better so fast. Stay in touch...LL
I told the doctor when I started, that I was going the whole year no matter what the test showed, this is because I believe it's a one shot deal, it works, or it doesn't work! Just my thought on the subject, but I think it put me in the right frame of mind to get to #35 already! Have a good one!
I too am confused about the PCR results. I understand the viral load can vary quite significantly in a person even within a day.
The best analogy I heard was the liver is like a swamp and testing the blood for HCV was like testing for mosquitos in your backyard.
The best analogy I heard was the liver is like a swamp and testing the blood for HCV was like testing for mosquitos in your backyard.
Hi - sorry to cut in here, but just wanted to let everyone know that I have finished tx (24 weeks) and just got my PCR results. Undetectable!!
It is so good to be finished. Starting to feel better already (1 week after final Riba).
I WAS a 3a, Female, 44 years old, initial load of 18,900,00.
Thank you all for your support during this time. I have so much admiration for you all. Newbies - keep the faith, it WILL end. Good luck to all.
Cheryl
It is so good to be finished. Starting to feel better already (1 week after final Riba).
I WAS a 3a, Female, 44 years old, initial load of 18,900,00.
Thank you all for your support during this time. I have so much admiration for you all. Newbies - keep the faith, it WILL end. Good luck to all.
Cheryl
Cmurphy: CONGRADULATIONS!!! ANOTHER 3A BITES THE DUST!!! I AM 3A TOO,I HOPE I CAN SAY THE SAME SOMEDAY...
jonihs: my first shot i took at 11:00am and by nightime i was haveing a fevor of 100 and chills,body aches,and moaning all night.(exactly like the flu) but,by 4:00am i got the brilliant idea to take a tylanol. after that the fevor broke and the pain mostly disapated. day 2 i was a little achy as well and i took another tylanol. worked great. by day 3 and on the sides got less and less. but, i did develop a speedy effect like i had drank pots and pots of coffee. well, the doctor prescribed zanax and that helped. But, it wasn't strong enough to help me sleep. so he procribed temezapam for night time. well, that was great i was getting sleep and having minimal sides,and brain fog. Now the last two weeks (i'm on week 7) i have developed moderate bone aches and pains, in my hip and knees.(nothing unbareable). i'm not sure it's the tx because i have arthritis and i'm very overwieght so it could be just that or the treatment could be agravating the arthritis. anyway now the dr. put me on a pain pill, (non'narcodic).i will try that tonight. i feel like a drug factory but i know i can handle the treatment. oh by the way i've also took prozack for the last 10 years for pms. i think that's why i seem to be having no depression at all. just a little achy. hope this encourages you. the effects were not even a smidgen of what i dreaded and expected. blessings to you, sandi
jonihs: my first shot i took at 11:00am and by nightime i was haveing a fevor of 100 and chills,body aches,and moaning all night.(exactly like the flu) but,by 4:00am i got the brilliant idea to take a tylanol. after that the fevor broke and the pain mostly disapated. day 2 i was a little achy as well and i took another tylanol. worked great. by day 3 and on the sides got less and less. but, i did develop a speedy effect like i had drank pots and pots of coffee. well, the doctor prescribed zanax and that helped. But, it wasn't strong enough to help me sleep. so he procribed temezapam for night time. well, that was great i was getting sleep and having minimal sides,and brain fog. Now the last two weeks (i'm on week 7) i have developed moderate bone aches and pains, in my hip and knees.(nothing unbareable). i'm not sure it's the tx because i have arthritis and i'm very overwieght so it could be just that or the treatment could be agravating the arthritis. anyway now the dr. put me on a pain pill, (non'narcodic).i will try that tonight. i feel like a drug factory but i know i can handle the treatment. oh by the way i've also took prozack for the last 10 years for pms. i think that's why i seem to be having no depression at all. just a little achy. hope this encourages you. the effects were not even a smidgen of what i dreaded and expected. blessings to you, sandi
I believe you have a tough choice to make at this juncture. The studies I have read indicate that those that don't achieve at least a two log drop by week 12 will have less than a 2-3% chance of achieving a SVR (Sustained Virologic Response)
Most Doctors will encourage you to continue with TX if you are close to a two log drop with the claim that a least the fibrosis may slow (Not totally proven from what I have read. I would have continued at week 12 if I was close to a 2 log drop.
Fortunately I was undetectable so the choice was easy. Obviously there are no gaurantees for those that clear early either. Your numbers, if I understand what you said seem to indicat a one log or so drop. You have a tough decision to make. If it was me and I was tolerating the TX I would probably continue.
On the other hand, your level of liver damage, age, ALT & AST levels, along with 36 years of infection seems to indicate that there is a pretty good chance that something else will get you before end stage liver disease (assuming you are not experiencing any symptoms at this time). So, there is my $.02....good luck and get opnions from everybody on this board....it is a great place to discuss our collective situation.
Most Doctors will encourage you to continue with TX if you are close to a two log drop with the claim that a least the fibrosis may slow (Not totally proven from what I have read. I would have continued at week 12 if I was close to a 2 log drop.
Fortunately I was undetectable so the choice was easy. Obviously there are no gaurantees for those that clear early either. Your numbers, if I understand what you said seem to indicat a one log or so drop. You have a tough decision to make. If it was me and I was tolerating the TX I would probably continue.
On the other hand, your level of liver damage, age, ALT & AST levels, along with 36 years of infection seems to indicate that there is a pretty good chance that something else will get you before end stage liver disease (assuming you are not experiencing any symptoms at this time). So, there is my $.02....good luck and get opnions from everybody on this board....it is a great place to discuss our collective situation.
Just re-read your message and saw that your results are at 8 weeks not 12 weeks...thats a horse of a different color....you should definately go to at least 12 weeks and see what the load is at that time. Most studies use the 12 week laod level reduction as the key indicator to high or low percentage SVR potential. The rest of my message would apply to 12 week test results GOOD LUCK
Thanks, I will definitely continue for at least 4 more weeks, just have to decide whether to test at 12 or wait for 16?
Only symptom I have is pain in my liver abdomen area since around 5/03. We had done endoscope from throat to as far as you can go, all normal.First thoughts were stomach problem, but scopes have ruled that out along with a complete C-scan from neck down. All Doc could come up with is the HEP-C inflammation is causing pain. Anyway pain continues on a daily basis, food and diet seem to have no effect. I was kinda hoping TX would help pain, even though I didn't get a 2-log drop, it was significant enough it seems to help the pain if the inflammation was causing it.
Anyway maybe the pain is something else if so that could actually be good news especially if I don't reach SVR.
BTW congrats Cheryl, must admit I'm a little jealous:))
don
Only symptom I have is pain in my liver abdomen area since around 5/03. We had done endoscope from throat to as far as you can go, all normal.First thoughts were stomach problem, but scopes have ruled that out along with a complete C-scan from neck down. All Doc could come up with is the HEP-C inflammation is causing pain. Anyway pain continues on a daily basis, food and diet seem to have no effect. I was kinda hoping TX would help pain, even though I didn't get a 2-log drop, it was significant enough it seems to help the pain if the inflammation was causing it.
Anyway maybe the pain is something else if so that could actually be good news especially if I don't reach SVR.
BTW congrats Cheryl, must admit I'm a little jealous:))
don
Man I imagine your realy worried. It was so scary waiting to start. For me it was the worse part of all this (except dx). I've been real lucky and my sides are mild. I actually didn't have any for the forst 2 months but I think that is uncommon from what I read here. I actually even thought I might not get any the whole tx. My hep RN did say it will happen, everyone has some. He was right but still mine are milder than most. As you may have read I work full time and keep up on life close to normal as possible but there are times I just have to rest. If I let it get away from me the sides increase. Drink water and rest when you can. It's so great if your husband shares this. My husbands support has been the single most important thing to help me get through this. It's a long dam year and it amazes me he hangs in there. I will never forget that. It's actually made us closer though there are surely days it's rough. If I am "moody" from the tx I just tell him I am "in a mood" or "riba is here" lol, and I go off and do my own thing until I feel better and he's good with it. Better than fighting cause if I have riba rage he won't win. lol again. I hope your lucky like me and don't have any. You never know! LL
Well, food or what I eat doesn't seem to effect level of pain, I usually have pain all the time.
I would think the CT-scan of upper body would have picked up any stones, I know they put an IV in for contrast and had me drink some stuff night/day before. Radiologist that was there at the time said he saw nothing abnormal in any of the organs,lumps,masses etc. Same as with colonoscopy and upper endoscopy all normal??? In fact all my doctors say I'm in very good health, except for the Hep-c of course:) My dad just turned 93 and is in perfect health.
Anyway I also heard liver can't feel pain, but Doc says membrane around liver can feel pressure from inflammation.
Even if I don't achieve SVR, it would help to get a non-detect at some point and then if I still have the pain it would probably rule out the liver inflammation as the cause. Of course I'm assuming a non-detect means no liver inflammation, maybe that assumption is wrong.
Dropping from almost 5 million to 600K you think would help the pain, it does seem slightly better but I also think after 7 months I am getting used to it too?
don
I would think the CT-scan of upper body would have picked up any stones, I know they put an IV in for contrast and had me drink some stuff night/day before. Radiologist that was there at the time said he saw nothing abnormal in any of the organs,lumps,masses etc. Same as with colonoscopy and upper endoscopy all normal??? In fact all my doctors say I'm in very good health, except for the Hep-c of course:) My dad just turned 93 and is in perfect health.
Anyway I also heard liver can't feel pain, but Doc says membrane around liver can feel pressure from inflammation.
Even if I don't achieve SVR, it would help to get a non-detect at some point and then if I still have the pain it would probably rule out the liver inflammation as the cause. Of course I'm assuming a non-detect means no liver inflammation, maybe that assumption is wrong.
Dropping from almost 5 million to 600K you think would help the pain, it does seem slightly better but I also think after 7 months I am getting used to it too?
don
I had some sx with the first 2 shots. The first shot I took about 2:30pm and woke up about 10:00pm with bad chills; took some tylenol and that seemed to knock the chills; then had some sweats and trouble sleeping; slight nausea the next morning for awhile. Not really too bad.
The second shot was a little worse for me; nausea, vomiting, headache; couldn't eat much or keep it down for most of day. Next day I was fine, though.
The next 3 shots, I had no sx at all. It was great.
Everyone is different so don't expect the worse. I have a tendency toward headaches and I think that contributes to my sx. Got some good pain killers for the headache on this last shot and was fine when the headache broke. Felt great the next day...no lingering effects at all.
I'm looking forward to my next few shots being sx free. I think drinking the water and staying hydrated is a big help as well as eating a balanced diet and getting some light exercise.
You'll find that you'll get tired much easier now but that's due to the drop in blood counts. So don't expect to be running any marathons for awhile.
I don't make formal plans for Friday nights since I do my shot on Friday morning. But, like I said, shots 3,4,& 5 were sx free so I went to parties, out to eat, etc; did the normal stuff.
Good luck and think positive. Many people have no sx at all or at least for the first few shots. My husband has been very supportive and even provides a little sympathy from time to time (which isn't his normal style).
Again, good luck and think positive.
The second shot was a little worse for me; nausea, vomiting, headache; couldn't eat much or keep it down for most of day. Next day I was fine, though.
The next 3 shots, I had no sx at all. It was great.
Everyone is different so don't expect the worse. I have a tendency toward headaches and I think that contributes to my sx. Got some good pain killers for the headache on this last shot and was fine when the headache broke. Felt great the next day...no lingering effects at all.
I'm looking forward to my next few shots being sx free. I think drinking the water and staying hydrated is a big help as well as eating a balanced diet and getting some light exercise.
You'll find that you'll get tired much easier now but that's due to the drop in blood counts. So don't expect to be running any marathons for awhile.
I don't make formal plans for Friday nights since I do my shot on Friday morning. But, like I said, shots 3,4,& 5 were sx free so I went to parties, out to eat, etc; did the normal stuff.
Good luck and think positive. Many people have no sx at all or at least for the first few shots. My husband has been very supportive and even provides a little sympathy from time to time (which isn't his normal style).
Again, good luck and think positive.
Congratulations cmurphy and best wishes for more good news down the road.
Everyone, could any of you that read this, please put in your experiense w/ the first 2 weeks of tx. I start Fri. and my husband has never read this forum. I would like to give him some kind of idea what to expect. Thank You very much. Joni
Everyone, could any of you that read this, please put in your experiense w/ the first 2 weeks of tx. I start Fri. and my husband has never read this forum. I would like to give him some kind of idea what to expect. Thank You very much. Joni
Pain in that area could also be gallstones, especially if pain comes more frequently when you eat a fatty meal like pizza or bacon. Doctor should do ultrasound to find out.
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